Posts Tagged ‘disability’

When I was in rehabilitation, the faculty would sew loops on my pants to make them easier to pull up and my insurance company bought me various sticks and hoops to help me dress. Nevertheless, I found getting dressed to be the worst part of the day – flopping around like a fish trying to get pants pulled up just to spend all day tugging a shirt down that won’t stop riding up. When I was discharged and back home, I often cried over my clothes. I remember one time I went to the bathroom and spent 45 minutes getting dressed and back into my chair just to have to go again! Shoes were also a problem. My feet swell significantly and normal shoes (even wide ones) caused blisters and sores. There are a lot of challenges to overcome in using a wheelchair but clothing is one of the worst.

I eventually abandoned the sticks, loops, hooks and shoes and went with whatever I could get on – usually this meant casual pull-up pants, tank tops, and thick socks. I’ve been through many rounds of buying and returning clothes from various stores since it’s impossible to try on anything in most fitting rooms. The only “fashion” I managed to find was rather unlikely – Victoria’s Secret makes “Sexy Tops” that also fit very well when seated. I assume this is just because Victoria’s Secret has perfected the art of cutting fabric to look good in any position; the tight stretch fabrics often keep cloth out of the way of my wheels but I’m hard on my clothes and unfortunately they only last about 50 washes before falling apart.

In my early days of using a wheelchair, I used to think about this a lot. I even have drawings in a notebook of clothes I thought I should go into business and design – including pants with longer legs and shirts with a little extra fabric in the back to compensate for pants that slide down when getting in and out of the car. Eventually, though, I resumed my regular life activities and forgot about those drawings; I just got used to all the drawbacks of trying to sit in clothes that were made to stand.

It’s been 8 years since the rehabilitation facility sewed loops on my pants rather than telling me there were clothes specifically designed for individuals who used wheelchairs… clothes I recently discovered.

I stumbled upon clothes for elderly individuals who use wheelchairs while looking for accessible shower solutions for our house; these were great and I ordered a few pairs of pants with zippers on the side! They are awesome. I can’t believe it took me 8 years to find something that would make dressing easier. The downside though is that someone younger has to hunt and peck for more “fashionable” styles among the inventory to avoid looking like they just rolled out of the local nursing home.

After about an hour of searching intensively online for other options, I have found a very limited selection of clothing designed for younger individuals who use wheelchairs. I’ve ordered a very small number of these too (very expensive!) and they should be here very soon. I’m really looking forward to trying them on.

In the end though I really have to wonder why I didn’t know about this earlier. Should I blame the therapists for not telling me? (They had to know, right?) Should I blame myself for not looking online? (I don’t know how I would have known what to look for?) Or, should I blame myself or being so attached from the atheist community (and consequently detached from the disabled community) that I am not actively aware of some of the ways disabled individuals live better. (I did have a very good friend once who was disabled from birth and she too would complain about clothes in the same way I have – implying that she was unaware as well.) Don’t get me wrong, it’s not a complete solution – getting dressed is still a pain in the ass – just ever so slightly less of one.

TAM 8 was held in the South Point Hotel and Casino. Prior to getting on the plane, I called to make a reservation for the shuttle. At that time, I was told that all of their shuttles (airport and mall) were accessible. I also spent a good deal of time online reading about how Las Vegas (casinos) have “treated the disabled as first class citizens even before the ADA” so I was looking forward to getting out and enjoying the city. At the airport the shuttle was marvelous and the driver was friendly…little did I know, the next time things would be so accessible would be when I boarded the shuttle to return to the airport. In the past seven years I have used a wheelchair, I’ve stayed in a number of hotels; South Point was, by far, the least accessible.

When I checked in, I was asked if I wanted a shower or bathtub… bathtub please! You have a tub bench, right? Wrong. The front desk called housekeeping and subsequently told me they did not have benches left. I asked when they anticipated having one as I was willing to go a night without a bath. She didn’t know so in the end I took the room with the shower. Logically, why would a hotel not have a shower bench for every accessible tub? No, I don’t mean every bathroom but simply every accessible bathroom. It just makes sense and not doing so would be a bit like not having enough sheets for all the beds! At the very least they could have kept track of which rooms their benches were in and how long the corresponding guests were staying. (I’ll come back to what happened when I tried to use the shower.)

The largest issue was the floor throughout the hotel. Keep in mind, the hotel was huge (2,200 rooms) and it was often a bit of a distance from A to B. Essentially, the floor was uneven – perhaps it could be described as wobbly in places – and often the carpet was not tight. It resembled more of a drapery than a tight floor covering. Logically, it’s probably difficult to pull the carpet tight and flat with an uneven floor!. It was difficult and exhausting to push myself and even when another person was assisting it was near impossible to keep my chair in a straight line. It was so bad that I would not be surprised if able-bodied people occasionally tripped or had issues with rolling luggage.

In the bathroom, the drain was not at the lowest part of the shower! Despite using bedsheets and towels to hold the water back, it was difficult and unsafe for me to transfer from my chair in the pond that quickly became the bathroom floor. I’m always in a bad mood after risking my safety for what should be an easy routine task. With that much water the floor stayed wet until housekeeping mopped it up; therefore creating a mess every time I returned to the bathroom to brush my teeth, etc.

Another major issue I had was the shuttle to the mall. Keep in mind, they told me the mall shuttle was accessible before I arrived. I purchased tickets to a show one night from the hotel travel agent; I even made a point of selecting a show closer to the shuttle drop off than the one I initially selected. When I went to board the shuttle there was no wheelchair lift. The driver said I could ask the front desk and they would send a shuttle with a lift. Well, after three hours at the front desk there was still no shuttle. The most annoying part of the entire conversation was when the supervisor told me they “aren’t required to have an accessible shuttle” as if that made up for the fact that they told me it was accessible before I arrived and I would not have purchased show tickets and been excited about the show if I knew I could not take the shuttle. Would a hotel tell you they have a pool and then, when you arrive and wonder where the pool is, state that they “aren’t required” to have a pool? I don’t think so.

Some of my accessibility issues were specific to the conference – for instance, I hate buffets. (TAM had two buffet lunches included in registration and I attended one.) The difficulty of balancing a plate with one hand while pushing with another is bad enough when able-bodied people let you ahead of the line. However, none of the other participants were considerate in this regard – in fact a few people pushed me out of the way as the buffet line resembled a stampede of cattle. Fun. I gave up a quarter of the way through and took a space at the nearest table.

Since I run the Drinking Skeptically in Richmond, I was interested in checking out the Drinking Skeptically event at TAM but that too turned into more of a disappointment. It was essentially held in a bar that I’ll describe as a fenced-in platform. While there was a ramp, the furniture was packed in so tight I couldn’t move once I came up the ramp. I probably made it about three feet before becoming so frustrated and heading back to the room.

There were tons of other issues in the hotel. In general, I felt like wheelchairs, walkers, canes, etc. were an afterthought. Almost like someone went through with a checklist of requirements after construction and ignored how someone with a disability actually lives. For instance, there were large signs indicating the presence of a movie theater but when I arrived there was only an escalator. I later discovered another (significantly smaller) sign for movies on the other side of the hotel where an elevator was in fact located. I did go to a movie and bowling – both of which were highlights of the weekend. Good thing I went on a scavenger hunt for that elevator! It is common practice in such a situation for a venue to have a sign at the dominate entrance to tell people where the elevator is and I think it is downright irresponsible to send those people who have the most difficulties with mobilities searching for a way upstairs!

They did comp one night in the hotel for the inconvenience of the shuttle situation and a $25 dining credit in consideration of spending three hours at the front desk. I did enjoy the meal but I would have preferred to see the show.

When I registered for TAM 8, I was intending to spend 2 weeks in Las Vegas. However, due to extenuating circumstances, the trip was cut to 5 days and that turned out to be a good thing. Although all the talks I did hear were great, when I have to fight so hard just to get ready and down to the conference room, I find it difficult to have a good time. In general, I am the type of person that tries to go out of my way to make things accessible but it really became such a disappointment when I was faced with barriers turn after turn. If only one or two problems had crept up it wouldn’t have been such a problem but it was almost a constant fight… I realize I didn’t even go into the bed being so high I almost injured myself. (EDIT: I’ve been told this line makes it sound as if I was high… I meant the bed was physically high – probably around 30 inches. The ideal – for the disabled – is between 19 and 21 inches.)

I won’t be returning to TAM in the future – at least not if it’s held at South Point.

I’ve been taking art classes once in a while at Northern Virginia Community College. I want to earn their AAA degree in Fine Arts and was working on it pretty consistently until about two years ago when the class I needed wasn’t being offered. [It’s a personal interest… as I’m also in graduate school.]

This spring, however, it was back on the schedule (Art 132, Fundamentals of Design II taught by Lauren Anne Jacobs). I was excited and things were fine until the third day. The instructor unlocked the door for the students and then left the room. We still had a few minutes before class and while I was unpacking my bag I overheard a discussion between two students.

Names (and possibly genders) have been changed.

Jack was telling Jill about a debate he recently had with an atheist. (I, of course, hear the “A” word and start eavesdropping a little more intently.) Jack asked the atheist what happens when they die. According to Jack, the atheist replied that they “return to the earth.” Jack didn’t really understand this and went home to think about it – he comes up with this “really cool” idea. Jack wants to kill the atheist, bury the atheist under a tree, and then return after some time to cut down the tree and have the Bible printed on paper made from the tree.

Unfortunately the hatred in his voice did not make it sound like Jack was kidding and – what I found to be even more astonishing – Jill never voiced an objection! The teacher returned and class began. I was terrified. I kept to myself. After what seemed like forever, the class eventually ended without incident.

(Note: Jessica has since informed me that there is a similar joke about an atheist ‘becoming’ fertilizer for a tree and being cut down to be used for the Bible. I didn’t know about the joke but I think it’s a coincidental as Jack made several very specific statements and the joke does not include *killing* the atheist.)

I extensively considered leaving the course. I concluded that I could slide through without attracting too much attention. These people didn’t know who I was and I didn’t have to tell them. I took my buttons from national secular organizations off my bag. Things quietly progressed for a few weeks. I did most of my work at home and kept to myself during class.

Our projects consisted of a physical art project and a 3-4 paragraph written statement. The first time we had a project due I was the only one who brought in a written statement. I wasn’t really comfortable being the center of attention when I was asked to read my written statement aloud. Here I am, someone who regularly speaks to large groups, and I’m terrified to take my eyes off the paper. At the end of the class, I went up to the instructor after Jack and Jill had left. I was going to say something but before I could she told me how much she “appreciated” my written statement… I ended up just rolling myself out of there without saying anything about Jack.

About 4 weeks into the class, I realized there was probably someone in disability services I could speak to… and I did try… it’s a long story, but essentially I didn’t get to talk to anyone.

For a few weeks things just proceeded along. Although I did most of my work at home I do enjoy art and the situation never affected the quality of my work. If anything, I did better work at home than I would have rushed through during class.

One day she lectured on “professionalism in the arts” where she told us how important it was that we all had a physical website. So at the next class meeting, I wasn’t surprised when she asked if anyone in the class had an online presence. I said I did, because I assumed it was a survey question and I assumed several of my classmates did as well.

She asked for the address of my website. I told her I did not want to share and it wasn’t about art. She asked what it was about and I said it was a collections of articles I wrote. She asked what the articles were about and I said “leadership.” She still wanted the address. I told her I didn’t want to answer and she proceeded to Google me *during* class. Due to a technicality she only found one link about my Automotive Technology degree. (She asked if I had a NVCC degree to confirm that she had found me and I replied in the affirmative.) She asked several more times for my address and finally told me her fiancé was great at Internet searching and she would have him find my site. When I left class I knew it was only a matter of time.

That evening I considered writing to the instructor to privately express how inappropriate I think it is to Google a student during class but after composing a few drafts I discarded the message. The instructor is young. She frequently shares quirky observations and stories about her other students. I felt she was only persistent with regards to my website address out of curiosity and I didn’t think I could explain this to her without giving her even more interest in finding me online and I had no idea how she would react.

After we returned from Spring Break, another assignment was due. I came into class late and she was already discussing the project. (Although I always completed the work, I frequently came a few minutes late to avoid conversing with the other students in the hallway before she arrived to unlock the door.) I said that I had my project and started to get it out. I was wondering why she was not walking around the room with her grade book when I realized I was – yet again – the only one with the assignment. I wanted her to just look at it and move on so I again said that I had it. Jack turned around and stared me down like he wanted to kill me right then and there. He could have been jealous, or perhaps just in a bad mood but of course all I could think about was Google.

During that class, one of the students did not bring all of his materials to work on the assignment and he went home. After he left, the instructor discussed his performance and personal life with the rest of us. I was a little taken aback. Did she talk about me when I was late? Would she talk about me if I was not there? Had her fiancé found me on Google? Would that be the topic of conversation?

Unfortunately I was going to be leaving class early the following week! I had already told her I needed to leave for an event but I didn’t tell her what the event was. I had arranged for Tom Flynn to come to Mason and I needed to pick him up at the hotel, set up the room, etc.

There was one class before the Tom Flynn event and I arrived on campus fashionably late – as usual. Only this time, I couldn’t get out of my car. I thought about the shooting on campus. I thought about being Googled in class. I wondered if next week they would be talking about me. And I knew it would not be difficult to figure out where I was. I turned the car back on, drove to my mother’s house, and tried to relax before work that evening.

The next day I sent the instructor and e-mail to inform her that I wouldn’t be returning.

She withdrew me from the class. Quite frankly, I felt relieved. I’m not at all excited about saving up another $450 to take the class again but it’s great to not be in an environment where I’m in fear all week about every upcoming Monday and Wednesday class. I am a very outgoing extroverted person but I had become so reserved and silent in the class. I didn’t even realize how stressful all this really was until I spent a week without the class. I’ve continued to create art – in fact, today, I was working something that would have been for that class.

I did eventually tell the instructor why I decided not to return. She agreed that what Jack said was unacceptable and she offered to speak to him about hate speech if I would provide a name. There are only 6 students in the class so it wouldn’t be hard to figure out but I decided not to do that at this point because I don’t know if I’ll still see him around campus. She also said that she should have realized I was uncomfortable with her Googling me in class. She did not, however, seem to understand that Googling a student *during* class is inappropriate overall. I did try to explain to her that there was a difference in searching for someone privately to satisfy curiosity and searching *during* class… I asked her what she would have done if she Googled a student and discovered something about them that clearly was not information to share – perhaps a criminal record, or pornography. She replied that she would simply have closed the browser and said she did not find anything. I told her that this really would not remove the tension for the student. They would be uncomfortable just knowing she knew which is quite different from realizing a teacher could *potentially* know from searching at home. I also told her that even if a student had nothing of interest online it could make *other* students uncomfortable. Would they be next? She didn’t respond.

As a result of all this I’ve changed the topic of my term paper for one of my graduate classes. I was researching the performance of students who transferred to 4-year schools after spending time in a 2-year college versus those who directly entered a 4-year college. I’ve decided to research the discrimination of atheists in the college environment. I’m disappointed to say that it’s much more of a problem than I ever would have imagined. The paper will be about 30 pages but I am planning to post it when I’ve finished revisions this May. Perhaps I’ll put it on my website for the next teacher who Googles me.

I’m really proud to be a part of the nontheistic community. For quite some time I was afraid to tell people how scared I was but everyone has understood. Although I’ve received Bibles at my door and tracts about hell on my windshield, I had never personally come across anyone who verbally expressed the desire to kill an atheist and I’ve never been in a situation before were I was afraid to tell someone I didn’t believe in their god. (I have received two death threats but they turned out to be staged.) I’ve heard plenty of friends from conservative areas tell me they had been threatened with physical violence due to their lack of belief but I now truly understand the extent of discrimination against those of us who don’t believe in god.

Note: One person has privately inquired about my grade in the class. I don’t know what my grade was but I assume it was an A or B. I turned in everything on time.

UPDATE: I did speak to someone in the disability office who was very responsive and has corrected the problem which kept me from speaking to someone. I also spoke to the Program Chair and his response was that he would put the incident in her file.

Since I became Organizer of Beltway Atheists, in July of 2008, I’ve been posting news stories and current events to the Beltway Atheists mailing list. I began this practice simply because it was something routinely done by the previous Organizer. Many people like the stories, some feel I spend too much time crawling the web on the look-out, and a small minority complains of excessive e-mails. However, there’s also a vocal group outside of Beltway Atheists who would like access to these stories but don’t want to join the group for one reason or another. Often, it is simply because they have heard of my work from a friend but do not live in the the area and would not be interested in events.

As a result, I’ve decided to place links to these stories here on my new blog rather than on the mailing list. Actually, I should take that back… I *may* also decide to send out a weekly summary on the mailing list. I will have to see how much time I have once the blog takes off. I also do not want to severely impact the level of activity on the list. There are also a few other reasons I’ve chosen to start a blog.

Primarily, I’d like to comment on some of the stories. Since I am the “leader” of Beltway Atheists, I’ve been hesitant to comment on the stories. Secondly, I’d like to talk about other issues. One of the things I’ve been hesitant to discuss in the past is my disability and how my disability (a spinal cord injury) and other medical issues affect my role in the atheist movement. I have not discussed this in the past because I wanted people to look at my activism rather than form a view of my based on my disability. I feel that I now have an established role in the community, however, and can bring light to my disability without it overshadowing my contributions to the community.

I had been thinking about starting a blog for several months. This is, for the most part, unfamiliar territory for me… last weekend, I asked Hemant Mehta about it and he suggested WordPress. So, here I am!